“All we would do is shave your head, cut a hole into the top of your cranium, pop the top off, place electrodes on the flesh of your brain for about two weeks while you are in the hospital. Then we could get a better idea of just how bad your seizures really are. I’ll go grab the paperwork and we can start your cognitive testing now!”
“What do you mean no? We’ve done this before with other patients. You are a great candidate for this surgery. I know what you need.”
“NO!!! It’s time for me to go home now.”
“Well, you want to get better, right? I’ll adjust your medicine and we will talk more about this.”
“No medication adjusting. I’m not having that done right now. I am ready to go home.”
“I’ll be right back in with a different doctor. They will convince you of the need for this exploratory surgery.”
A different doctor finally came in, someone I had never met prior to this evaluation. I told her “no” as well. The doctors met and decided I needed to see a therapist because I wouldn’t agree to their medical plan.
This scenario is a real event that took place in 2013.
I left that five-day video EEG a little more shaken than necessary. I felt shaken because I was being pressured into something that didn’t sit well in my gut. It was a resounding NO from the depths of my soul.
As a survivor of many medical issues, one of the bigger lessons I have learned has been about advocacy. My biggest supporter in my health journey has been myself. I know how I feel. I get the gut reaction when a doctor gives their advice.
In 2013 I had been fighting seizures for 22 years. At the time, I was only five years married, and had a three-year old daughter. I thought I could handle whatever seizures came my way because I was an “experienced epileptic.” I had fought through seizures for 22 years already…what was a few more years, right?
For six more years after that I continued to have seizures. The seizures came more frequently and with more force.
Friends would come at the onset of my seizure, make sure the kids were safe, and then leave either when I came out of the seizure or when my husband came home from work. I had a community of support but I was growing weary of the way I was feeling almost every day.
Every year my neurologist would approach the subject of brain surgery but would back away quickly when I said no.
For six years I wrestled with the thoughts of brain surgery…What if brain surgery made me worse? What if there was a possibility that I would be cured from seizures? Why can’t I handle these seizures by myself and lead a “normal” life?
Sometimes it feels lonely when you’re advocating for yourself or a loved one. The weight of whatever decision you make feels so incredibly heavy.
So I have prayed. Then I’ve prayed harder. And longer. I also have prayed that God would miraculously heal my seizures without doctor intervention.
Prayer was an integral part of my choices and life for that year. I prayed about all of the tests I would have to take should I undergo surgery. And I prayed before all of the tests I finally took. I also prayed that my seizures would end before I had to face the decision of surgery.
At night, when the rest of the house would be asleep, I would stare into the dark room and pray. Sometimes words would form, other times I would listen. I would listen to what the Lord was speaking into my heart. Other times I would set aside time to pray but no words would form. I had no idea what to say next, but I knew I needed to be in the presence of God.
A passage that was encouraging to me in those moments was Romans 8:26-28:
In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God. And we know that in all things God works for the good of those who love him, who have been called according to his purpose.
Those verses reminded me that not only did I have a God in heaven that was taking care of me, but I had the best advocate: The Spirit was advocating for me. He was going before me to prepare me for what was to come.
I wasn’t my only advocate anymore – I had the Trinity on my side! While I had an active role to play in prayer, I didn’t have to be my own healer. The healing would come in God’s good timing.
My brain surgery story had a wonderful ending in 2019, but that was only a chapter in my health journey. As I continue to face health challenges, I now realize I am my own best advocate when I partner with the Holy Sprit. Yes, I question the diagnosis; I research, pray, and find new doctors if the current ones don’t rise to the challenge. I am the squeaky wheel that gets the grease, so to speak. But I know I’m not alone in this decision-making.
That said, the health complications can get so overwhelming at times. I attended a women’s retreat one fall, and during our prayer and worship time I asked the Lord when all of these health problems would end. Through tears, I looked heavenward while worshiping and asked God to hear from him.
His response was, “Trust me.”
And I am…I am trusting God for the outcome.
Dear Father in heaven, we need your help. I surrender my timing, my will, and my control over to you. Take my burdens and help me to see them the way you do. Let me fix my gaze on you, the author and perfecter of my faith. Amen.
Jessi Greaves has been a wife to her understanding and faithful husband for 14 years and has two daughters (12 and 5). She has worked various temporary jobs from Youth For Christ to “emergency babysitter” for friends at church. Currently, she is a full-time patient, as for the last three years, she has averaged three appointments a week for her list of diagnoses. Her faith in God has given her grit and determination to see through all of her medical complications, and she is thankful for Him everyday!